It ain't good, folks. Wife has cancer. But I am sober. - Page 2

Mr AZ, I may not know you that well. but I supposed members of this forum are like a bunch of siblings that we all have...

Be strong. Thats easy for me to say, I know it may not be easy for you to do. Have faith in yourself, and always remember that you have one another- you and your wife...

My thoughts and prayers with you...

September 23rd, 2011

roamsk

Yes, AZ, the doctors may be right, ideed it may be metastatic if another tumor which was confirmed as cancerous was found at another secondary site (the ileum). It was probably my mistake when I first read your post that I had understood that only a lymph node was found outside. Cancer is habitually staged according to the TNM classification, where T= size or direct extent of the primary tumor, N= degree of spread to the regional lymph nodes, M= presence of distant metastases.

You can read more in depth about the TNM for various types of cancers here, but please be patient, because it is rather confusing and possibly complicated, and DO trust your doctors, because Southwestern & especially MD Anderson are very very reputable, world renown, alongside, I guess, Sloan Kettering in NYC.

Also, it may be worthwhile to research a little some institutions which may have some specific logstanding expertise in specific types of cancers, like Mass General in Boston for gynecological cancers, and may also be involved in research. Ongoing research protocols may be found at ClinicalTrials.gov.

The notion of "metabolic cancer" was something somewhat new to me, so I am not sure whether the doctors using it were referring to the relatively recent metabolic theory of cancer causation (in which cancer cells' "breathing", usage of oxygen= metabolism is abnormal, usually genetically abnormal), or to the actual aggressiveness of the cancer, or to the responsiveness of the cancer to some specific types of treatments. I am leaning towards thinking that the doctors may have mentioned it to you specifically because they might have been thinking about some ongoing specific possible tretaments: either etiological (that try to go directly to causation), or adjunctive (supplementary treatments in addition to the classical surgery, chemo, radiation therapy) treatments that are being used these days taking into account this metabolic theory.

You must remember that Oncology is an extrordinarily fast evolving field in medicine, and treatments which may not have been available 12 months ago may already be on the table these days or in the next few months.

Do NOT be afraid to ASK, ASK & ASK, even if you or your wife may feel anxious that someone might consider you a "pesky", or "difficult" patient. You MUST allow yourself to be as "selfish" as possible in this current battle you are both facing. Because it IS a battle and the cancer IS the enemy. Allow yourselves to be emotional, nasty, irritable, desperate, etc. by it, as it comes.

It may be possible that you and your wife might respond in different ways, or in different "stages" to the illness, and may feel at times that you are not on the "same page", but don't let this be a wedge between the two of you. Make some time, if need be, for scheduled "strategy talks" in which you can allow yourselves to communicate to one another what your thoughts & emotions are, and what your own ideas on what to do next is, and try to let her speak her mind, then speak your mind, then, if possible reach a compromise, as you go from one stage to the next. Just like brainstorming sessions in a war room.

But don't let the "war room" time dominate 24 h/24 h of your time together. That is why I was actually suggesting allowing specific scheduled times for such "strategy talks". Schedule separate time for just doing fun or nice pleasant relaxing things together or for one another too, without, if at all possible, trying to think about the cancer, even though it may still be there in the back of your minds, and this is normal.

I applaud you for your discipline in your fight against addiction. Disciplined & highly conscientious people have a hard time sometimes allowing themselves to grieve for themselves. Allow time for yourself alone as much as you need it. Ask permission from your wife for such times during one of your "strategy planning" sessions, even if or especially if you feel a little guilty about it.

And do not ever feel guilty about being angry at GOD, if you feel like it, (even if you feel/believe/think it was Him who has helped you in your life and tribulations until now, and you want to continue having Him as an ally in this battle too), because I assure you He can take it. That is actually, IMHO, His job, in one of His roles, (if you will permit me), as Father or Parent of all of us his human children: to be Mature and to be able to take it when you or I get mad, angry, resentful at Him.

September 23rd, 2011

roamsk

P.S. I know you may also worry a bit about the children, about their needs & emotions. Your wife will surely worry about them too, and you should allow her to speak about this if she brings it up during "war room" time, or wishes to bring them along or talk about them instead of talking about her & you during some your scheduled relaxing times together. Remember and gently remind her too, if it seems appropriate or protective towards her own personal needs, that children were especially constructed as such by both G-d & mother Nature to be more resilient & flexible-adaptable than us adults over 26-28 years of age.

I do not know how old exactly they are, but, IMHO, even if they may first temporarily feel the whole arrangement may be a "disruption", (because children in general love & thrive on stability), they are in fact fortunate to have two fathers working "in shifts" to help along & a mother. Sure, they are anxious & distressed too because of the real monster of their mother's severe illness, but it is also the responsibility of their biological father to help them along, find some support groups or activities for them, schedule time with mom, etc. For them ultimately, in the long run, this is a maturing & learning experience. (I know this may sound a bit "cold", but I was thinking of the very long run of their future lives as future mature adults, not of the immediate crisis moment.)

--

September 25th, 2011

Sara

AZ,

My prayers are with you and your family. I would also like to let you know that I'm very appreciative that you would share your story with this forum. Yes, He works in mysterious ways-through each of us.
God bless you and your family. You are all very lucky to have the love you share together. I wish you peace and hope.

September 26th, 2011

AZ_Infantry

OK, we finally got some more information.

Brandy's cancer is Stage III Metastatic Cervical/Uterine (Invasive Adenoendocervical) Cancer with Cervical Dysplasia (Invasive Carcinoma) , including one questionable Left Iliac Lymph Node. She will be having a Total Radical Hysterectomy followed by Chemo and then PET/CT to follow up with the questionable Left Iliac Lymph Node.

This time, in English:

Brandy has cervical cancer that has spread to her uterus wall (Dysplasia) and then "burrowed" itself deep into the uterine cell structure. It used to be there, it went away, it came back, it spread, it burrowed deeper into her.

Metastatic can mean that it came back or that it has moved. It means both in her case.

Stage III is one of five stages (beginning with 0) that are not progressive. In other words, Stage III cancer is always Stage III cancer, even if it moves, morphs or kills you.

***

Brandy will have a Total Radical Hysterectomy. This means they will remove the Cervix, Uterus, Fallopian Tubes and Ovaries.

While doing so, they will remove the suspected Left Iliac Lymph Node (depending on any further damage uncovered during the surgery).

She'll have at least 2 to 5 nights in the hospital (I will be there with her in a private room) and at LEAST 6 weeks recovery, then the chemo, then more testing - IF everything inside is what it seems like from the imaging results thus far.

What scares the crap out of me is that the nurse said, and I quote, "The doctor has to make sure that it isn't so advanced that surgery will make it worse, but so far it looks like surgery is a go." That was her answer to my, "Is it in her bloodstream and spreading, and will this surgery stop it?"

Let me put that into the only words I know how to: "It could be that it is so advanced that we'd have to gut her like a fish and kill her to remove it."

We're just a little numb right now. So many questions answered, so many new ones in their stead. So much anxiety relieved, so much yet to deal with.

I will say this:

Thus far, I am thoroughly impressed with The University of Texas Southwestern. They are 180 degrees opposite the VA in a very good way. The nurse was extremely charming, answered every question she could for us, and just generally impressed the hell out of us. We had her on the phone every moment of 45 minutes.

They are listed as the Number One hospital in Dallas, and thus far are completely living up to that reputation in spades. That they are going to give us a private room and let me stay overnight there with the VA paying for it is just fantastic.

Hopefully I'll have much more info on the 29th. Please keep us in your thoughts and prayers.

September 27th, 2011

5.56X45mm

My friend; both of you are in my thoughts and prayers. I hope and wish that she will pull through and you two will spend many more years together.

September 27th, 2011

vivid2012

Hope everything goes better. Good luck for u.

September 27th, 2011

namvet

yes AZ. you and your wife are in our prayers.

October 1st, 2011

AZ_Infantry

Topic: UPDATE

30 Sep update -

Those of you keeping up with this blog are already aware that yesterday, the 29th, was the "big day" for Brandy and I, the day where we met with the actual surgeon at the University of Texas Southwestern to discuss all the details of the procedure and prognosis. Those of you just getting involved are hereby informed

It didn't go off as we expected, but I will try and keep the steps we went through as concise as possible (go ahead and snicker at me ever being concise; I'll wait). You could just skip to the end, but you may end up confused as there has been some misunderstanding and the only real way to explain those errors is to at least touch on the steps within the visit itself.

To begin, I have to offer my absolute endorsement of UT Southwestern. I cannot remember a hospital in which I or anyone was treated with such dignity, professionalism and tact. They were friendly and warm, never once sighed at our simpleton questions, and were completely forthcoming. Because I am used to working with the VA, I research everything so that I am ready for the runaround and the ensuing lecture to the so-called doctor to stop BS'ing us. That was never an issue at UT, and her surgeon even applauded us for being so educated on the matter. We were not lied to once that I can tell, and Brandy's doctor even admitted to a few questions she had no answers for - a far, far cry from the know-it-all's at the VA.

After completing all the financial rigmarole (with an actual person in an actual one-on-one explanation session in a private room that covered every detail) we were whisked off for the standard visit precursors: height and weight; pain scale assessment; medical history screening; blood pressure, pulse and temperature; and information of that type. That was done by the Physician's Assistant (PA), who seemed to be a nice enough lady sans her smoking lectures. Lecturing Brandy is one thing. I am a 40-year old Infantry veteran and don't need lifestyle lectures from a would-be, want-to-be doctor when we are there to discuss gutting my wife like a fish. The lady, as I said, was nice enough. She simply lacked tact in some areas.

After that and another nurse visit and finishing more paperwork, we saw the surgeon (I also refer to her as the oncologist and Dr. Kehoe, so accept those terms interchangeably, please).

Pause for an inappropriate comment. I love Brandy with everything I am, and straying is never something my personal honor would ever allow me to do. But Dr. Kehoe is hot. I'm not sure what my subconscious envisioned her as, but a mid-30 shazaam specimen of the female curvature with an alluring smile wasn't it, obviously. After surreptitiously absconding with a few paper towels and blotting up the small puddle of drool that had fallen from the corners of my agape jaw, I caught hold of my facilities and was able to continue.

The first thing she admitted to, a welcome reprieve to the narcissistic nature of the VA's doctors, is that the tests we'd already been through were not comprehensive enough for her to make an absolute determination as to exactly how invasive the surgery needs to be. She said, and I am quoting from memory here, "My heart tells me that we will be proceeding with a Total Radical Hysterectomy, but without further testing there is just no way to tailor your procedure to be the very best for you, and that's what I want to do before we operate."

Yay, doc. Points for that. I should show my gratitude by taking her fishing sometime.

What? I have two sleeping bags.

Dr. Kehoe also clarified all the cancer-specific terminology, but it all matched my research I have already annotated here, so there is no need for redundancy. The end verdict remains the same: definitive sub-cell cancer of the uterus and a possible "second" cancer area around the left iliac area, specifically the left ileum (the ileum is your pelvic bone, and the top is called the iliac crest).

After that came the dreaded exam. This is going to be a bit graphic, so if female anatomy and procedure makes you squeamish, look away now.

Brandy has been complaining of some pretty severe pain "down there" and has been bleeding from her rectum pretty badly since the LEEP biopsy (conical biopsy, but of the type in which they cauterize while they cut versus a cold cut and then cauterization). She's also been severely bloated, and has some edema (water retention) in her legs and her belly. In all, she has gained 26 pounds in two months, the majority of it since the LEEP (Loop Electrosurgical Excision Procedure).

The doctor gloved up and in she went. She did a visual inspection, a tactile (feeling) examination of first the vagina, and then the ****, and then both at the same time, and finished with yet another biopsy (a simple one with the clipper thingies). By that time, Brandy was fighting back the tears and losing the battle and had a death grip on my hand that -- I kid you not, people -- hurt the hell out of these hands that have been working construction for over 20 years. She was in pain, and badly.

Again, accolades to the doctor and nurse here. The way they spoke to Brandy was just about as warm and concerned as I have ever heard from anyone. And they were kind to me, as well, as I guess I was showing some distress at Brandy being in all that pain regardless of the poker face I was doing my damnedest to keep on. The VA doesn't even allow me in the same room when these exams are going on, much less behind their curtain of secrecy they refer to as the patient privacy screen. Dillweeds. Have I mentioned how glad I a UT is doing this?

Brandy has a pretty bad infection in her vaginal track and cervix due to the LEEP biopsy (again, up yours, VA. I will be writing some people). Before we can even do anything, she needs a one-week regime of antibiotics to clear that infection up, as she is so internally swollen that the oncologist can't even see everything she needs to see, much less isolate the one possible iliac polyp.

During that time, the doctor wants more blood work and a PET scan just to see what else the VA missed. The PET scan has to be done after the week of antibiotics, but the labs have to be done today. Sigh. Back to the VA, as they (the VA) didn't approve extra testing. Of course they didn't - it's just my wife's life, so why let red tape and paperwork and bureaucracy rule the day? Millions of coffee breaks are counting on it. Grrrrr.

Sorry...

The surgeon feels strongly that the tests will only verify what she thinks, that we need to proceed with the Total Radical Hysterectomy. So we have scheduled that as early as possible -- all swelling and infection has to be gone, lest a surgical mistake happen due to the tissue being "wrong" -- which is the week of the 17th (2.5 weeks). She again made sure that we knew that all of this was tentative, as she is going to alter whatever she feels she needs to in order to preserve Brandy's best interests. I respect the HELL out of that.

So, blood work. Start antibiotics today. PET scan in 7 days. If nothing new pops up, surgery on the week of the 17th.

After that comes the scary part:

When the doc guts her, she is going to remove every polyp she can find (usually in the 17 to 20 range, she said, as there is no realistic way to get them all). Those and all of Brandy's insides get shipped off for further testing, which will give us the knowledge to judge whether or not we need chemo or further surgery.

We have the option of leaving the ovaries or having them removed IF -- the big if again; sigh -- the tests don't reveal anything more... dire. <shudder> If we can, and if we decide to, and if the doc is able to follow through during surgery, she (the doc) will move one ovary to the back in order to (hopefully) shield it from any radiation/chemo treatments and preserve its function to make estrogen.

It is those tests, combined with next week's PET scan, that will offer us the extent of the invasive direction and power this crap has. The doctor was very adamant that because Brandy is only 36 and is in good health, the prognosis is excellent. That may be a little too optimistic for my cynical nature when it comes to doctors, but I am doing my best to offer this one as much trust and latitude as I can with my positive initial impressions of her.

So that's where we're at today - a holding pattern, the waiting game, circle the wagons and watch for dust on the horizon, the sounds of incoming. Bah.

Dr. Kehoe even said as much: "I know that your response to all this is typical: 'Let's not wait, let's cut it out of her now!' But we all want what is best for Brandy's individual case, and that means we have to show some patience and let the tests guide us." Something along those lines, at any rate. Still, I remain anything but assured.

We're off to the VA for this blood work and to pick up these antibiotics. Thanks again for reading, the prayers and the well-wishes. It means the world to Brandy and I right now.

October 1st, 2011

namvet

Quote:

Originally Posted by AZ_Infantry

30 Sep update -

Those of you keeping up with this blog are already aware that yesterday, the 29th, was the "big day" for Brandy and I, the day where we met with the actual surgeon at the University of Texas Southwestern to discuss all the details of the procedure and prognosis. Those of you just getting involved are hereby informed

It didn't go off as we expected, but I will try and keep the steps we went through as concise as possible (go ahead and snicker at me ever being concise; I'll wait). You could just skip to the end, but you may end up confused as there has been some misunderstanding and the only real way to explain those errors is to at least touch on the steps within the visit itself.

To begin, I have to offer my absolute endorsement of UT Southwestern. I cannot remember a hospital in which I or anyone was treated with such dignity, professionalism and tact. They were friendly and warm, never once sighed at our simpleton questions, and were completely forthcoming. Because I am used to working with the VA, I research everything so that I am ready for the runaround and the ensuing lecture to the so-called doctor to stop BS'ing us. That was never an issue at UT, and her surgeon even applauded us for being so educated on the matter. We were not lied to once that I can tell, and Brandy's doctor even admitted to a few questions she had no answers for - a far, far cry from the know-it-all's at the VA.

After completing all the financial rigmarole (with an actual person in an actual one-on-one explanation session in a private room that covered every detail) we were whisked off for the standard visit precursors: height and weight; pain scale assessment; medical history screening; blood pressure, pulse and temperature; and information of that type. That was done by the Physician's Assistant (PA), who seemed to be a nice enough lady sans her smoking lectures. Lecturing Brandy is one thing. I am a 40-year old Infantry veteran and don't need lifestyle lectures from a would-be, want-to-be doctor when we are there to discuss gutting my wife like a fish. The lady, as I said, was nice enough. She simply lacked tact in some areas.

After that and another nurse visit and finishing more paperwork, we saw the surgeon (I also refer to her as the oncologist and Dr. Kehoe, so accept those terms interchangeably, please).

Pause for an inappropriate comment. I love Brandy with everything I am, and straying is never something my personal honor would ever allow me to do. But Dr. Kehoe is hot. I'm not sure what my subconscious envisioned her as, but a mid-30 shazaam specimen of the female curvature with an alluring smile wasn't it, obviously. After surreptitiously absconding with a few paper towels and blotting up the small puddle of drool that had fallen from the corners of my agape jaw, I caught hold of my facilities and was able to continue.

The first thing she admitted to, a welcome reprieve to the narcissistic nature of the VA's doctors, is that the tests we'd already been through were not comprehensive enough for her to make an absolute determination as to exactly how invasive the surgery needs to be. She said, and I am quoting from memory here, "My heart tells me that we will be proceeding with a Total Radical Hysterectomy, but without further testing there is just no way to tailor your procedure to be the very best for you, and that's what I want to do before we operate."

Yay, doc. Points for that. I should show my gratitude by taking her fishing sometime.

What? I have two sleeping bags.

Dr. Kehoe also clarified all the cancer-specific terminology, but it all matched my research I have already annotated here, so there is no need for redundancy. The end verdict remains the same: definitive sub-cell cancer of the uterus and a possible "second" cancer area around the left iliac area, specifically the left ileum (the ileum is your pelvic bone, and the top is called the iliac crest).

After that came the dreaded exam. This is going to be a bit graphic, so if female anatomy and procedure makes you squeamish, look away now.

Brandy has been complaining of some pretty severe pain "down there" and has been bleeding from her rectum pretty badly since the LEEP biopsy (conical biopsy, but of the type in which they cauterize while they cut versus a cold cut and then cauterization). She's also been severely bloated, and has some edema (water retention) in her legs and her belly. In all, she has gained 26 pounds in two months, the majority of it since the LEEP (Loop Electrosurgical Excision Procedure).

The doctor gloved up and in she went. She did a visual inspection, a tactile (feeling) examination of first the vagina, and then the ****, and then both at the same time, and finished with yet another biopsy (a simple one with the clipper thingies). By that time, Brandy was fighting back the tears and losing the battle and had a death grip on my hand that -- I kid you not, people -- hurt the hell out of these hands that have been working construction for over 20 years. She was in pain, and badly.

Again, accolades to the doctor and nurse here. The way they spoke to Brandy was just about as warm and concerned as I have ever heard from anyone. And they were kind to me, as well, as I guess I was showing some distress at Brandy being in all that pain regardless of the poker face I was doing my damnedest to keep on. The VA doesn't even allow me in the same room when these exams are going on, much less behind their curtain of secrecy they refer to as the patient privacy screen. Dillweeds. Have I mentioned how glad I a UT is doing this?

Brandy has a pretty bad infection in her vaginal track and cervix due to the LEEP biopsy (again, up yours, VA. I will be writing some people). Before we can even do anything, she needs a one-week regime of antibiotics to clear that infection up, as she is so internally swollen that the oncologist can't even see everything she needs to see, much less isolate the one possible iliac polyp.

During that time, the doctor wants more blood work and a PET scan just to see what else the VA missed. The PET scan has to be done after the week of antibiotics, but the labs have to be done today. Sigh. Back to the VA, as they (the VA) didn't approve extra testing. Of course they didn't - it's just my wife's life, so why let red tape and paperwork and bureaucracy rule the day? Millions of coffee breaks are counting on it. Grrrrr.

Sorry...

The surgeon feels strongly that the tests will only verify what she thinks, that we need to proceed with the Total Radical Hysterectomy. So we have scheduled that as early as possible -- all swelling and infection has to be gone, lest a surgical mistake happen due to the tissue being "wrong" -- which is the week of the 17th (2.5 weeks). She again made sure that we knew that all of this was tentative, as she is going to alter whatever she feels she needs to in order to preserve Brandy's best interests. I respect the HELL out of that.

So, blood work. Start antibiotics today. PET scan in 7 days. If nothing new pops up, surgery on the week of the 17th.

After that comes the scary part:

When the doc guts her, she is going to remove every polyp she can find (usually in the 17 to 20 range, she said, as there is no realistic way to get them all). Those and all of Brandy's insides get shipped off for further testing, which will give us the knowledge to judge whether or not we need chemo or further surgery.

We have the option of leaving the ovaries or having them removed IF -- the big if again; sigh -- the tests don't reveal anything more... dire. <shudder> If we can, and if we decide to, and if the doc is able to follow through during surgery, she (the doc) will move one ovary to the back in order to (hopefully) shield it from any radiation/chemo treatments and preserve its function to make estrogen.

It is those tests, combined with next week's PET scan, that will offer us the extent of the invasive direction and power this crap has. The doctor was very adamant that because Brandy is only 36 and is in good health, the prognosis is excellent. That may be a little too optimistic for my cynical nature when it comes to doctors, but I am doing my best to offer this one as much trust and latitude as I can with my positive initial impressions of her.

So that's where we're at today - a holding pattern, the waiting game, circle the wagons and watch for dust on the horizon, the sounds of incoming. Bah.

Dr. Kehoe even said as much: "I know that your response to all this is typical: 'Let's not wait, let's cut it out of her now!' But we all want what is best for Brandy's individual case, and that means we have to show some patience and let the tests guide us." Something along those lines, at any rate. Still, I remain anything but assured.

We're off to the VA for this blood work and to pick up these antibiotics. Thanks again for reading, the prayers and the well-wishes. It means the world to Brandy and I right now.

got a pal of mine i served with in nam. he's going to the VA for throat cancer surgery soon. and im worried sick